In planning for end of life, we first need to be able to talk about it.
Death—it’s a reality of life that on a certain level we know will come for us all, but one that in our modern world we have managed to push to the peripheries. The average lifespan for a Canadian in 2020 was a hair shy of 82 years – over 84 years for women and around 80 for men. This means we are living on average a quarter century longer than we did a hundred years ago, a fact we tend to forget about when we think about the institutions established in this country in generations past.
This coupled with the fact that multigenerational households are increasingly rare in this country means that for a great many Canadians, death is a remote concept that only rears its head upon the passing of parents, which increasingly takes place in the latter half of people’s lives. More than ever before, it has become easy to simply not talk about death and, when we’re forced to, do so in hushed tones and with euphemisms like ‘pass away’.
The upshot of this is that of Canadians under the age of 35, less than a quarter have a will and less than ten percent have drawn up powers of attorney. This is a precarious position to be in. Despite life expectancies being longer than ever, people still die all the time and at every age. Without these important legal documents in place, family members’ grief can easily be exacerbated by legal hurdles and interpersonal conflict.
Planning for end of life, however, requires braving the subject of death, something that feels unnatural to many of us. Sometimes it takes an unexpected, sudden death in the family or in one’s inner circle to bring the subject to the forefront.
A (Sort of) Cautionary Tale
Tania Jacobs’ story is a prime example of how the unimaginable can occur in an instant and a lesson in the importance of communication within families. A Calgary-based registered psychologist and mother of two children, aged ten and twelve, Tania lost her husband Trevor when she was 37. A sudden illness – invasive Group A Streptococcal disease – took him from initially calling in sick from work on a Friday to dying on a dialysis machine in hospital two days later.
So unusual were the circumstances of her husband’s death that, even within a young widows’ group she joined after her loss, she felt like something of an outsider.
“Within the group, about a third of the women had lost a partner to cancer, another third to suicide and other mental health-related deaths, and a further third to heart attacks, car accidents, and other relatively common occurrences,” she notes.
“And then there was me in this very narrow band of those who lost someone to freak illness. My experience represented a tiny minority within this group.”
Had her family dynamic been different, Tania could have ended up a cautionary tale. While she and her husband had had brief conversations about not wanting to be hooked up to a machine at end of life, there was no will or enduring power of attorney in place, and her husband’s finances were not particularly well organized. For example, he had an RRSP that was set up in his childhood with his sister as beneficiary, something he had not changed in adulthood.
“I was very lucky that there was no fighting among family members,” she asserts.
“I’ve heard plenty of stories where this is not the case. In my situation, my husband’s parents and siblings were completely on board with me being the sole beneficiary. In the case of my sister-in-law, when I contacted her about the RRSP, she immediately transferred the beneficiary status over to me. That said, it would have been smoother and easier had we had all those documents in place.”
She also benefited from the fact that her stepfather had been the personal representative of the will for both of his parents and was able to guide her through the estate process. A referral from a lawyer friend of hers to an estate specialist also meant she was able to navigate this process smoothly despite being, in her own words, a “grieving zombie who was barely able to function” and not having a will in place.
In the aftermath of her husband’s death, Tania got all her personal affairs in order, including a will, personal directive, and enduring power of attorney. Furthermore, she notes that many of the people in her inner circle did the same thing shortly thereafter.
“I know a lot of our friends took us as a cautionary tale and went and got this stuff sorted out,” says Tania.
“Many of our friends were like, wow, we don’t have a will! We don’t have any of that stuff in place either. As for my mom, who is a really organized human being who certainly had those documents in place, [she] took this as a sign that she needed to update everything. It’s like there was a ripple effect involving people in my life, where everyone took this as a sign to take some sort of action.”
She also intends to broach the subject with her own children.
“Now that my kids are moving towards adolescence, I see us having conversations about this stuff. They’ve already been through a lot in terms of grief counselling and whatnot, so they’re very familiar with death. Of course, I don’t want to scare them or get them worked up about the possibility of their mother dying, but it’s coming to be that time. Even explaining to them what this conversation was about, saying that I would be talking about daddy’s death and the preparation people need to do around that, was perhaps the beginning of that conversation.”
A Death-Adjacent Life
For Tania Jacobs, death was a remote concept until it struck her family out of the blue. For fellow Calgarian Marie Carlson, however, it’s been a reality of life for a long time and one with which she has become ever more comfortable. Marie is a retired former health policy specialist with Alberta Health Services with a background in medical sociology. She is now an energetic volunteer at Calgary’s Dulcina Hospice, the largest hospice facility in Canada west of Montreal, where she interacts daily with residents in the final months of life.
Marie’s introduction to death came early with the loss of her brother at age 31 to colon cancer when she was only 15. Her brother’s death led her to pursue a partial degree in theological studies in addition to her sociology degree and to dive into the subject of death and dying. Her interest in the subject stayed with her over the course of her career and influenced her decision to become a hospice volunteer following her retirement.
“I’ve always wanted to do this work,” says Marie of her volunteer role.
“Back when my brother died there wasn’t palliative care like we know today, and I’ve always wanted to help people live as well as possible at the end of their lives.”
In her volunteer work, Marie finds herself up close and personal with death daily. She notes that in her work, as well as in life, she does not shy away from the d-word that so many people replace with euphemisms like ‘pass away’. In the hospice setting, the word ‘death’ is standard parlance.
Given her longstanding acquaintance and interest in end of life, it’s hardly surprising that Marie takes her own end-of-life planning very seriously.
“I’d say I’m pretty prepared for death,” she explains.
“I’m very aware of my own mortality and I continue to get ready for end of life. I’ve done all my paperwork—my will, my personal directive, and my enduring power of attorney, and I encourage others to do the same. I’m also doing my ‘death cleaning’ right now. I’m of Swedish descent, and the Swedes have a tradition that they call ‘death cleaning’, where you clean out all your junk before you die. It’s a way of getting things in order so that there’s less work to pass on to your family when the time comes. I don’t want to wait until I’m too old, so I’m doing it now.”
Her relationship with death has also impacted her relationships with family and friends and the emotional presence she brings to her interactions.
“I’ve experienced a lot of deaths over the years,” she notes.
“My brother died. My parents are dead. My niece is dead. I’ve had a cat and a dog die. Some of my friends have died. I have a sister who is 87 and her health is starting to fail. We don’t get to this stage in our life and not experience death. Knowing what a difference companionship can make to a dying person and their family has affected how I engage with others. I think about my brother, who was only 32. His death really impressed upon me how important it is to just be there, to just be open and be present. It makes me mindful to spend quality time with the people I care about.”
Meanwhile, Marie continues to be positively impacted by her interactions with hospice residents and the palpable joy many of them exude at end of life.
“I’d say my biggest surprise working in a hospice setting has been the amount of laughter and joy you encounter. I know that probably sounds weird. There’s a lot of black humour that I hadn’t expected. Sometimes people say, ‘Gee, that must be a really depressing place to work. How could you go in there?’ But the amount of laughter that we have with our residents, families, hospice staff and other volunteers is unbelievable. Obviously, not every day is like that, but it’s like a little epiphany how beautiful this experience can be.”
“With hospice care, it’s essential to have a strong volunteer program with skilled and compassionate coordination, such as we have at Dulcina,” she further adds. “It’s the entire package of programs and volunteer support that enables us to do this valuable work.”
Talking About Death
Death—it’s a topic of conversation that never killed anyone, but one that many cultures avoid as though it did. Fortunately, a death positivity movement has begun to take shape in recent years, a movement that promises to take the stigma out of the subject and create a climate more conducive to end-of-life planning.
One of the most visible drivers of death positivity has been the growing worldwide phenomenon of Death Cafes. Founded by Jon Underwood and Sue Barsky Reid in the UK in 2011, the Death Cafe movement has since gone global, with gatherings now having been held in more than 80 countries. Death Cafes are get-togethers typically held in libraries, places of worship, and other public venues as well as actual cafes. They provide a safe space to talk about death and dying, which, in Underwood’s view, “helps people make the most of their (finite) lives.”
Death Cafes can also serve as a venue for talking about the importance of end-of-life planning. In Alberta, Covenant Health’s Palliative Institute has been promoting Death Cafe as such a venue, providing resources for current and aspiring Death Cafe facilitators while also producing publications related to advance care planning and end-of-life-related legal documentation for distribution at these events. One publication is My Wishes Alberta, a workbook that serves as a gentle introduction to end-of-life planning, encouraging readers to reflect on their most salient values and identify their wishes for if and when they succumb to a serious illness.
In the cases of Tania and Marie, it took an untimely death in the family to trigger inner reflection and outer conversations about death. This in turn leads to legal documents being put in place to ensure their own end of life will be as pain-free for family members as possible. The death positivity movement seeks to destigmatize the subject of death and create a culture wherein people don’t have to experience the unimaginable to ready themselves for the inevitable.
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DISCLAIMER The information in this article was correct at time of publishing. The law may have changed since then. The views expressed in this article are those of the author and do not necessarily reflect the views of LawNow or the Centre for Public Legal Education Alberta.
About Ben Freeland
